Hi, I am new here, DS1 ASC

[DietcokeGirl]

Hi all

I am ashamed to say I have been lurking for a long time!

DS1 (3.7) was diagnosed with an Autistic Spectrum Condition just before he was 3 yrs old. They haven't been more specific than this!

He is mainly non-verbal apart from the odd words ('no', brother's name, some body parts, attempts to say name of some foods). He uses PECs but communicates mostly by pointing/taking us to/bringing us, what he wants. He can feed himself, has a good & varied diet tho since turning 3 yrs old he is more fussy and refusing to eat a lot of his old favourites. He will try some new things but won't entertain some things. He won't drink squash, eat sweets or chopped fruit (colour/sensory?) but will now have any colour fruit/smoothie tube going.

The main problem at the moment is getting him to nursery, back from playground, in the bath. TBH getting him to nursery is a complete nightmare some days. I have used visuals - doesn't work! Once he gets there and has laid on the floor for a couple of mins he jumps up and is fine. I am not sure I agree it's a resistence to change/routine thing as if I said 'DS1 let's go to playground/playcentre/supermarket/xxx's house he would jump up from whatever he doing and get shoes/coat etc. We took him to a b/day party on saturday and although he did his own thing most of the time/played upstairs on/off he didn't mind going and did join in when he felt able to. We didn't need to prepare him or use any visuals. He doesn't always join in at snack time/lunch at nursery unless it is a food he really enjoys. They also struggle getting him indoors after outdoor playtime but visuals seemed to have worked for them.

I am baffled as he is not consistent! Does this all sound familiar?

This is getting long so will take a break now!

Welcome from another (mainly) lurker! If you want him to eat fruit how about buying a mini bottle of his regular smoothy but pour a bit out and add some home made juice. Just a half teaspoon to start with or he'll see it coming from a mile away!
J x

Hi- just to say welcome

It really does sound familiar! My DS has ASD DX and has always been difficult to move from something he's enjoying to something he doesn't fancy. I don't think he actually has much reliance on routine as would be expected with his DX. He's always been happy to do things he likes! We get a lot if resistance to things he doesn't like, such as bedtime, getting washed and dressed, going to school. He's quite difficult to get out of the house in the morning, but once outside and on his scooter, he's really cheerful! It's a real wind up!

We just plough on through his tantrums. Ignoring them doesn't seem to make them improve but it seems like the right thing to do. At least they haven't got worse. (Unless he's a bit poorly, which he doesn't recognise, and gets super grumpy)

He's 11 now and has got progressively more fussy with his food. He is so thin that we tend to pander to his fads a bit. He has a healthy but restrictive diet. He has a very small appetite and uses loads of energy bouncing around.

Your DS does sound more consistent if you factor in whether he actually wants to change from place to place. He may put up a token resistance, then get distracted and maybe interested in what's happening next.

Children with ASD are all as different as their own personalities are different. His nursery or school will have to get to know what makes him tick, as even teachers or TAs experienced in ASD find each child's behaviours or triggers different.

My DS is fab and I can't imagine him any other way. Your DS sounds like a similar little 'character.' They are more clever than we give them credit for sometimes. HTH

Just read that back and it doesn't give much advice! Sorry. We have found with DS that it helps if he knows in advance what is going to happen. It doesn't get rid of his strop but does lessen it. When he was younger we'd say or show a pecs 5 mins before we did anything. Now we say 1/2 hour before and 5 mins before. Maybe have a sand timer or kitchen timer to show him what 5 mins is. Say 'In 5 mins we are going to school' show him the timer. 'When the timer rings (or the sand goes through) we are going to school.'

It obviously depends on his understanding. Maybe a pecs type strip as a timetable with now and next on it. Now you can 'watch tv/ play' next 'put shoes on' then 'go to school.' You take each pecs card off as each task is completed. Sorry if you have already tried this.

Hello, welcome

I have a ds a similar age (3.10) with ASD.

Bit late now (and should have gone to bed ages ago) and I will try and post properly, but just wondered, does your ds go to mainstream nursery? If so, are the staff adequately trained in ASD do you think? Some of the difficulties sound like they could be to do with motivation - your ds sounds pretty definite about what he does/doesn't like! If there are things to motivate him and reinforce the gains to him (eg food he likes) perahps you could try and use this in a reward-system? Perhaps try building a sticker chart (if he responds to that), so when he gets 5 stickers he'll get xyz. Worth looking into reward-based reinforcement (ie ignore tantrums/inappropriate behaviour, reward 'appropriate' behaviour)? We do ABA with ds and it is amazing (I'm becoming almost evangelical about it). Won't bore you with it now, but worth looking it.

Anyway, very late, must go to bed, but hope you stick around here, it's a great place to learn

Hi

Thank you for your replies.

Ellen J - thank you for sharing some info about your DS. It does sound very familiar! DS1 is v flexible and doesn't seem to rely on a routine at the moment. He often shows a token resistance then gives in and goes with the flow so life has generally been fairly easy. I guess I may have not noticed some behaviours so much when he was easy to carry home, up the stairs, get into a pram etc. It's now he is getting older and I can't get him off the floor thats causing the stress! I think you are right in that he is actually consistent as it's fine when he wants to do the activity (which is most things) but hard to get him to do something he is adamant he doesn't want to do. The reports all say he is happy and content but everything on his own terms/agenda. His receptive language appears to be good and he does seem a clever little boy.

I do use visuals to prepare him for nursery, doesn't really work tbh. I usually coax him round with a motivator but took 45 mins y/day morning. He was not going to get ready for nursery no matter what! It is the biggest stress for me at the moment. Bathtime is not great but some nights he jumps in and loves it! He is clean so not too worried about that for now. I may try and pecs strip for morning routine as definitely going to need it for school at this rate. I have a timer as well so will start using it properly. I guess I have been reluctant to use too many visual structures as don't want to encourage a need for routine etc while he is quite flexible.

I never go out without symbols/motivators just in case he doesn't want to come back. It is hard to reason when most of the time I don't know what he wants. He may just want to run round the field a few more times but he can't tell me that. Frustrating for both of us.

I do tend to ignore behaviours that I don't like (if appropriate) and respond positively as not to encourage him to keep doing it. This is not a big problem at the moment tho as it's just standing on arm of sofa type stuff and looking to see if I am paying attention to him! I then praise for good sitting/walking etc. He did go thru a phase of taking ages to go to bed but if he starts doing roly poly off bed etc I just ignore it and he gives up after a couple of mins.

DS1 is in mainstream nursery and they are great. He goes part-time and gets a lot of 1:1 support. His keyworker is very tuned into him, doing PECs, turning-taking and now using a timetable. She is new to all this and has totally taken it on board, reading up, going on any courses offered. I am so lucky as think would have struggled without their support. They now using motivators if he won't go back upstairs after outdoor play etc. It seems to be working for them. They do their best with circle time/story time and let him join in when he can. They never exclude him if they are going for a short walk/decorate church in village at xmas etc. I actually tell them they don't have to take him but they are always up for it!

I am sure I will be coming back for lots of advice about new behaviours that appear from time to time!

Your Ds's nursery sound great and I think you are wise to try to learn now how to move him from one situation to another.

I made a big mistake with Dd3 when she was little because if I wanted to go somewhere and she didn't I used to just pick her up and ignore the tantrum.
However she is now a big 8 year old and there is no way I can pick her up. If she says she doesn't want to go somewhere it can take some hefty negotiation to get her moving.

Good luck with the routines, we use a visual timetable for getting ready for school now, so far it has worked well for us.

Oh and welcome to the board.

Thanks Ineedalife - Yes I really need to get on with a visual timetable. I think I managed up until now by getting him into a pushchair/carrying him and now he is growing up I can't do that. He is a strong boy and is going to be tall. He already looks school age. Do you only use a visual timetable for getting ready for school or for the rest of the day/evening etc? Some mornings are really easy and he goes with the flow but sometimes I am in tears by the time we get in the car!

We only use it for getting ready for school,it was recommended by someone on this board, although it would be very useful to get out of the house at weekends too.

Dd3 is a good reader so we use words instead of pictures and I am considering making another set for weekends and holidays.

Dd3 can be very stubborn as well as anxious so I make sure I never tell her that we are going to be late as this seems to make her go much more slowly.

I used to get upset in the mornings but I have spoken to the HT at school and said that I am not going to get stressed or drag her to school and if she is late, she is late.[I didn't quite say it like that].

I know it is easy to say but try to relax in the mornings and go at his pace, it has made such a difference to us and 9 days out of 10 we are at school on time.

Thanks for the advice, good idea about having a word with the school. It is worrying me about being late. I try to keep relaxed and make it fun so he gets distracted and goes along with it. I mostly get anxious about nursery days because DS2 (18ths) starts getting fed up/hungry/tired while I am chasing DS1 round the house with visuals/motivators! Plus, I realise that I need a consistent approach ready for starting School.

Glad to hear that your strategies are working and you managing to keep calm! Do you have other DC's school age/ on the spectrum? Hope you don't mind me asking.

I know all children are different but would be interested to know at what age other children with ASD/ASC speech really developed.

hi im new to Mn too my ds is 10.9 (ASD) verbal but very bad communicating skills we tried picture stories and he has been given pecs for when hes sad or anxious in the playground but it didnt work well for him i think he got to such a hightened state he would forget he had them in his pocket tbh he had salt when 4 and has it now constantly as is SS and extra sessionsive two other DCs who are NT in secondary school the dreaded teens which is causing issues atm as DS hasnt much Spatial Awareness we still have problems with DS not wanting to go with us when we go out esp if its somewhere new his speach was delayed about a year but still he often bables about nothing in particular although he is totally lucid in his speach just i think he likes to make funny noises he has a lot of sensory issues with clothes and food textures and their colour too your nursery sound fantastic i do hope you find first school just as helpful its hard getting their understanding often , welcome to MN

I can imagine it is sooo much harder with a little one to think about too. I have 2 older dd's, Dd1 is 22 and most likely has Aspergers although she is not dxed and Dd2 is NT and 15.

Dd's 1 and 3 are extremely verbal, they talk or sing more or less continually, although they are not really bothered if they are talking at you or to you.

Today Dd3 gave me a massively long explanation about how she spends playtime walking around the edging strip around her school playground. She told me all the ins and outs of the edging strip and couldn'tcare a jot about whether I was interested or not.

She enters conversations half way through and changes the subject to what she is interested in.

She repeats words over and over again and sometimes uses echolalia.

If she gets a Dx it will probably be Aspergers which is basically high functioning autism but without the speach delay.
She struggles with emotional language too and she takes things very literally.

She also has lots of sensory issues with clothes, noises,smells etc.

welcome out of the lurking shadows Dietcokegirl - love the name, love the drink!
I would say that the dx of Autistic Spectrum Condition is for the same reasons that you are writing this post - they want a consistency in behaviour before they know where they stand. I have a NT DS of the same age 3.7 - and he can be quite inconsistent in his behaviour. As DCs get older, they become more of a known quantity in their behaviour. My eldest DS is dx dyspraxic and although he was dx pre school, many of the attributed behaviours have become more and more evident as he has got older.
When you get the notification of the next school, it's worth the nursery doing a good handover - with you present - as to what support the nursery currently gives. It would be a chance for you to meet with the school's SENco and get a rapport going. Even try for a tentative IEP for the first few weeks of the new term in September - and how the school plans to support you with the 'getting to school' routine, 'coming in from the playground' routine etc.
If nothing else, you will have alerted the school that these have the potential to be issues, you have asked for their support, and started as you mean to go on - being involved.

I don't know why it took me so long...felt quite wrong lurking!

We have met the headteacher of the local school and she is aware of the diagnosis. The school appear to be really set up for children on the spectrum and it has a good reputation for meeting their needs. Fingers crossed eh! We have applied for a statement and just had notification that it is going to panel, which is a good start. He has an IEP at nursery. I will make sure they do a good handover but am sure they will as they are so keen to support him. My eyes fill up (like now) every time I think of him leaving his nursery!

I am rather impatient and was hoping for a more specific diagnosis but like you say he is 3.7 and behaviour is inconsistent. I think it is the worst bit not knowing how he is going to develop. However, he has progressed so much in the last year and seems more in our world, if that makes sense.